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Ostomy Awareness Day 2026 at OneLegUpAlex Media 10-3-26 · OneLegUpAlex Media

• 0:00
  Speaker 1: Here's your host, Alex Garrett.
• 0:04
  Speaker 2: All right, well, before we get to Lou Terminello, this
• 0:10
  Speaker 2: is probably my second podcast and last podcast of the day.
• 0:14
  Speaker 2: So I want to give a shout out to Ostomy
• 0:16
  Speaker 2: Awareness Day. Lou, as you know, and you know me
• 0:18
  Speaker 2: for a while, I've had an ostomy since I was
• 0:21
  Speaker 2: at birth. And I'll tell you, that decision the doctors made,
• 0:25
  Speaker 2: a little tiny me to do that and put that
• 0:29
  Speaker 2: device on me. 35 years ago changed my life. I
• 0:33
  Speaker 2: am here today because of it. And, uh, I'm so
• 0:35
  Speaker 2: thankful to have on. And sometimes it can get a
• 0:38
  Speaker 2: little weird, but.
• 0:39
  Speaker 3: Hey, it keeps me here. And that's what matters most.
• 0:42
  Speaker 2: And it keeps 1 million Americans here every day. And
• 0:46
  Speaker 2: I would say ostomy, uh, those with an ostomy are
• 0:49
  Speaker 2: working to smash stigmas every day, stay included in everyday life.
• 0:53
  Speaker 2: And the best resource is ostomy association of America. I've been, uh,
• 0:59
  Speaker 2: representative of them in Washington, D.C.
• 1:02
  Speaker 3: Last year already. I can't believe I'm flying.
• 1:05
  Speaker 2: But, Louie, it is Asami Awareness Day, so I want
• 1:07
  Speaker 2: to give a shout-out to all those who have one.
• 1:10
  Speaker 4: Alex, thank you for having me, as always.
• 1:12
  Speaker 5: Yes, and I'm glad that you brought the attention to
• 1:17
  Speaker 5: today being Asami Awareness Day.
• 1:20
  Speaker 4: Alex, just briefly, briefly, and.
• 1:24
  Speaker 5: God bless that you got one 35 years ago so
• 1:27
  Speaker 5: we can enjoy your incredible journey and your incredible creative mind.
• 1:34
  Speaker 5: And first of all, everybody should like and follow Alex.
• 1:41
  Speaker 5: He's such a versatile podcast of sports, history, politics, religion.
• 1:49
  Speaker 6: He can do it all.
• 1:50
  Speaker 5: But Alex, you might want to just briefly touch on,
• 1:53
  Speaker 5: for a lot of people who don't know.
• 1:55
  Speaker 1: What is an ostomy?
• 1:57
  Speaker 3: All right.
• 1:57
  Speaker 2: So an ostomy is a way to use the bathroom.
• 2:02
  Speaker 2: And so do number two. And so for many, some
• 2:07
  Speaker 2: of the day is just taking that time to clean
• 2:10
  Speaker 2: the area and to clean the stoma. For me, they
• 2:13
  Speaker 2: use part of my colon to make it a stoma.
• 2:15
  Speaker 2: so I can easily use the bathroom. I mean, I
• 2:17
  Speaker 2: don't know if it's too much information, but there's life.
• 2:20
  Speaker 2: And before we jumped on, I said, okay, I'm going
• 2:22
  Speaker 2: to refresh myself. I'm home all day, but I figured,
• 2:25
  Speaker 2: why not just freshen up? And I figure, and I
• 2:28
  Speaker 2: feel like to not get discouraged about the ostomy and
• 2:34
  Speaker 2: to continue to clean it is the best way to
• 2:37
  Speaker 2: go about life because it gives us dignity. It gives us,
• 2:40
  Speaker 2: you know, a sense of like going out and starting
• 2:43
  Speaker 2: the day. And I used to be like, all right, Kyle,
• 2:45
  Speaker 2: Maybe I'll change it a day or two. But then
• 2:47
  Speaker 2: I start doing it every day and I feel like
• 2:49
  Speaker 2: there's a sense of confidence when I change it every day,
• 2:51
  Speaker 2: I have to say.
• 2:55
  Speaker 5: Well, again, and the only reason, obviously, a lot of
• 2:57
  Speaker 5: people don't realize some of the maladies that so many
• 3:01
  Speaker 5: people in this world and so many Americans have. And
• 3:04
  Speaker 5: to bring it to light, I think, is important. And
• 3:07
  Speaker 5: you have overcome so many obstacles that really shows what
• 3:13
  Speaker 5: the human spirit is all about. And that's a credit
• 3:16
  Speaker 5: to you. So God bless you.
• 3:19
  Speaker 7: And, you know, we had... There are many reasons to
• 3:24
  Speaker 7: do it.
• 3:24
  Speaker 2: My condition is bothered, but others have ulcerative colitis, like
• 3:28
  Speaker 2: actually former NFLer, Rolf Banerski, a former place kicker for
• 3:32
  Speaker 2: the Chargers, who returned to football after undergoing the surgery
• 3:36
  Speaker 2: and getting an ostomy.
• 3:36
  Speaker 3: I don't know if you know about that.
• 3:38
  Speaker 4: And then you have those with Crohn's disease.
• 3:42
  Speaker 3: That's really the big one.
• 3:44
  Speaker 2: Those with Crohn's are typically, they are, I don't want
• 3:48
  Speaker 2: to say front of the line, but they go right
• 3:50
  Speaker 2: in our priority to get an ostomy.
• 3:51
  Speaker 7: So it's, it's a wide reasoning why.
• 3:53
  Speaker 2: People get one. The United Ostomy Association of America. Thank
• 3:57
  Speaker 2: God for Janine Gleba, who was the, uh, advocate manager
• 4:01
  Speaker 2: on behalf of all of us. So she, she's great.
• 4:03
  Speaker 2: I've talked to her before and, uh, it's just nice
• 4:06
  Speaker 2: to know there's a resource out there. And of course
• 4:08
  Speaker 2: my buddy, Danny, who passed away this year in March,
• 4:11
  Speaker 2: he had one and he told his story about it.
• 4:13
  Speaker 3: Um, this, you know, last year with me.
• 4:17
  Speaker 5: The modern advancements in medicine are just incredible.
• 4:21
  Speaker 2: And, uh, which is in 1991. I mean, that's really
• 4:26
  Speaker 2: a blessing in and of itself. And while you can
• 4:28
  Speaker 2: enjoy the rest of Terminillo's take at One Leg Up
• 4:31
  Speaker 2: Alex Sports, I want to now take you to a
• 4:34
  Speaker 2: couple of different things with United Osteomy Association of America.
• 4:38
  Speaker 3: Firstly, back in 2025, I was in D.C.
• 4:42
  Speaker 2: On behalf of the UOAA advocating alongside the Digestive Disease National.
• 4:48
  Speaker 4: Coalition, and I caught up with our advocate leader, Janine Gleba.
• 4:54
  Speaker 2: Well, if you asked me when I signed up to
• 4:55
  Speaker 2: be part of the UOAA, United Ostomy Association of America,
• 4:59
  Speaker 2: that I'd be talking with our advocate leader, Janine Gleba.
• 5:03
  Speaker 2: I mean, who knew this would be happening, but I'm
• 5:06
  Speaker 2: so glad to finally meet you.
• 5:07
  Speaker 8: I'm very happy to be here and so happy you
• 5:09
  Speaker 8: came down to D.C.
• 5:10
  Speaker 3: To advocate.
• 5:11
  Speaker 2: I was so focused on your presentation because you're representing
• 5:14
  Speaker 2: how many millions of Americans have ostomies?
• 5:16
  Speaker 8: About About one million have an ostomy or consonant diversion.
• 5:20
  Speaker 7: So, yeah, it's pretty big.
• 5:21
  Speaker 8: But we're an underserved population.
• 5:23
  Speaker 7: Absolutely. Tell us why this is so important to you, though. Oh,
• 5:26
  Speaker 7: my goodness.
• 5:27
  Speaker 8: Like I said, I just think it's a crime that
• 5:29
  Speaker 8: so many people suffer and what they have to go through.
• 5:32
  Speaker 8: Bad enough they came to this situation to need this
• 5:35
  Speaker 8: type of surgery, but then not to have their supplies
• 5:38
  Speaker 8: covered or to receive poor care. You know, when they're
• 5:42
  Speaker 8: in the hospital or not have access to their ostomy nurse.
• 5:45
  Speaker 7: So there's just so many things that we need to fix.
• 5:48
  Speaker 2: And, you know, you were talking about the supply switching thing.
• 5:50
  Speaker 2: And it blows my mind because the doctors do give
• 5:52
  Speaker 2: us one thing and the insurance tells us something else.
• 5:54
  Speaker 7: Is that what goes on? Sometimes it does.
• 5:56
  Speaker 8: Sometimes your insurance might restrict you to a certain brand.
• 5:59
  Speaker 8: or they might restrict you to a certain supplier, and
• 6:02
  Speaker 8: then that supplier might not cover the supplies that you need.
• 6:05
  Speaker 8: And some people have, you know, their pouching system, it
• 6:09
  Speaker 8: fits their particular needs.
• 6:11
  Speaker 6: And, you know, some people have allergies.
• 6:13
  Speaker 8: And they can't use every type. They're not one size
• 6:16
  Speaker 8: fits all.
• 6:17
  Speaker 2: Janine, I run this adapting podcast. So for those who
• 6:20
  Speaker 2: may be adapting to an.
• 6:21
  Speaker 7: Ostomy, I've had it for 33 years of my whole life.
• 6:23
  Speaker 2: Those who are adapting it today, what's your message to them?
• 6:26
  Speaker 8: That you can have a wonderful quality of life, that
• 6:29
  Speaker 8: there are people out there to support you.
• 6:31
  Speaker 7: That.
• 6:34
  Speaker 8: It will be like, again, walking down the street, you
• 6:37
  Speaker 8: never know someone has an ostomy.
• 6:38
  Speaker 7: And you've been doing this for a while now.
• 6:40
  Speaker 6: I've been with UOAA for almost nine years.
• 6:42
  Speaker 2: So what's your approach when you go to see all
• 6:44
  Speaker 2: these different.
• 6:45
  Speaker 7: Senators and congressmen?
• 6:47
  Speaker 2: What advice would you have when someone goes to advocate
• 6:49
  Speaker 2: with these people?
• 6:50
  Speaker 8: For me, I think the number one thing is that education,
• 6:52
  Speaker 8: because most people don't even know what an ostomy is.
• 6:55
  Speaker 8: So I just take it as an opportunity to educate
• 6:58
  Speaker 8: them on what an ostomy is, raise awareness about the
• 7:01
  Speaker 8: issues that affect our patient population. And, again, we support
• 7:05
  Speaker 8: many different people. It's all different reasons why someone might
• 7:10
  Speaker 8: need an ostomy. So, for example, the Safe Step Act.
• 7:13
  Speaker 8: You know, it doesn't, it's not necessarily because of the ostomy,
• 7:16
  Speaker 8: but someone with IBD might have been, they might have
• 7:19
  Speaker 8: their ostomy because of their IBD.
• 7:21
  Speaker 2: And I noticed the diagnoses are always coming late for
• 7:23
  Speaker 2: some people.
• 7:24
  Speaker 7: How do we fix that? That I don't know. That's
• 7:27
  Speaker 7: probably a doctor.
• 7:29
  Speaker 3: All right.
• 7:31
  Speaker 2: It's amazing this time because just Friday was rare disease day.
• 7:34
  Speaker 7: I mean, what timing for this conference, right?
• 7:36
  Speaker 8: Yeah, well, we have it the same time every year,
• 7:38
  Speaker 8: the first Sunday and Monday in March. So it is good,
• 7:42
  Speaker 8: but especially with everything going on right now.
• 7:44
  Speaker 7: One last thing. I saw one of the emails. Not
• 7:46
  Speaker 7: every state recognizes ostomy awareness. Did that change? Did everybody
• 7:49
  Speaker 7: recognize it eventually?
• 7:50
  Speaker 8: We'd like that, but we depend on our advocates because, again,
• 7:54
  Speaker 8: you heard that today, too. Your elected officials want to
• 7:57
  Speaker 8: hear from their constituents. So we need constituents in every state.
• 8:01
  Speaker 8: to advocate to have Austin Awareness Day recognized.
• 8:04
  Speaker 2: And I follow it on my podcast every year. So
• 8:06
  Speaker 2: thanks for putting the fight up out here.
• 8:08
  Speaker 7: Yeah, yeah, yeah. We should do a podcast for Austin
• 8:10
  Speaker 7: Awareness Day.
• 8:11
  Speaker 2: Once all this craziness is over, we'll do a long-form podcast.
• 8:15
  Speaker 8: And we also have a national conference there.
• 8:17
  Speaker 7: I don't know if you know about it.
• 8:18
  Speaker 2: I did not, but we should find out about it online.
• 8:20
  Speaker 7: Yeah, I'm going to give you that later on. I'll
• 8:21
  Speaker 7: see you later. Nice to meet you, Janine. Thank you
• 8:24
  Speaker 7: so much.
• 8:24
  Speaker 6: Thank you so much for coming.
• 8:25
  Speaker 7: God bless. All right.
• 8:26
  Speaker 6: You need me to do something again?
• 8:29
  Speaker 7: And then... If you remember correctly, if you remember, I
• 8:34
  Speaker 7: was actually.
• 8:35
  Speaker 2: Invited to go to the UOAA event in Long Island,
• 8:41
  Speaker 2: and I got to meet the leaders of the UOAA and.
• 8:48
  Speaker 4: Just really see.
• 8:48
  Speaker 2: What the United Ostomy Association of America was about firsthand.
• 8:54
  Speaker 3: Here was my recap from that dinner.
• 8:58
  Speaker 2: All right, and welcome inside to this edition of One
• 9:01
  Speaker 2: Leg Up with Alex Garrett. And again, we're going to
• 9:03
  Speaker 2: put aside Elon and Trump. Maybe I'll get to that
• 9:06
  Speaker 2: at some point, but this takes precedent because this is
• 9:11
  Speaker 2: about an event that is supporting so many with the
• 9:16
  Speaker 2: condition and situation that I've had for 33 years. known
• 9:24
  Speaker 2: as Ostomy Awareness. You might have heard Janine Gleba of
• 9:27
  Speaker 2: the United Ostomy Association. Well, she directed me to connect
• 9:32
  Speaker 2: further and head to the golf outing on Long Island,
• 9:35
  Speaker 2: which happened this past Monday night.
• 9:38
  Speaker 4: And it was the first ever UOAA golf outing.
• 9:42
  Speaker 2: And I got to meet the amazing executive director of
• 9:46
  Speaker 2: the UOAA, Christine Ryan, as well as Anthony Giordano, and Mr.
• 9:54
  Speaker 4: George Salome. And the director of.
• 9:59
  Speaker 2: This golf app, outing, of the committee for the golf outing,
• 10:02
  Speaker 2: John Nowak. I want to start with him because he
• 10:04
  Speaker 2: set the stage for how important this event is for
• 10:08
  Speaker 2: the one million Americans living with ostomies today.
• 10:14
  Speaker 1: Anthony had asked me, obviously.
• 10:16
  Speaker 9: Anthony and I go back a long way, but we
• 10:18
  Speaker 9: haven't been friends since. since the time I've known him.
• 10:22
  Speaker 9: Anthony and I went to Kellenberg High School together. We
• 10:25
  Speaker 9: graduated in 1989. I knew who Anthony was.
• 10:31
  Speaker 1: He knew who I was.
• 10:32
  Speaker 9: But we ran in two totally different crowds. He was
• 10:35
  Speaker 9: campus ministry. He was drama. I played basketball. He was
• 10:43
  Speaker 9: in the very advanced classes. I was in the not
• 10:47
  Speaker 9: so advanced classes, so we never really crossed paths.
• 10:54
  Speaker 1: But I knew who Anthony was.
• 10:56
  Speaker 9: Everybody knows who the nicest kid in your class is.
• 10:59
  Speaker 1: And he was that kid.
• 11:01
  Speaker 9: When you saw him in the hallways, everybody in high
• 11:04
  Speaker 9: school is trying to be something or discover, find out
• 11:06
  Speaker 9: who they are. Anthony was always comfortable in his own shoes.
• 11:10
  Speaker 9: He was always smiling, he was always having a good time.
• 11:13
  Speaker 9: Everybody around him was always laughing. He felt comfortable in
• 11:18
  Speaker 9: his own skin. We graduated in 89. I went to
• 11:22
  Speaker 9: college up in Maine. Anthony went to Hofstra. And Anthony,
• 11:27
  Speaker 9: although I didn't know him personally, like I said, Anthony
• 11:31
  Speaker 9: got very sick. And through connections, everybody stays in touch.
• 11:37
  Speaker 9: We had a pay phone at the end of our hall, right?
• 11:40
  Speaker 9: We didn't even have no cell phones. There are no
• 11:43
  Speaker 9: phones in our rooms. We get little messages on our door, stickies,
• 11:48
  Speaker 9: and I got a message that, oh, you remember Anthony
• 11:50
  Speaker 9: from high school, very sick. And I don't remember the exact,
• 11:54
  Speaker 9: in my mind, I'm thinking that it was, he may
• 11:57
  Speaker 9: not make it.
• 11:59
  Speaker 1: He's very sick.
• 12:01
  Speaker 9: And Anthony, I learned years later, got an ostomy, got
• 12:05
  Speaker 9: a procedure that saved his life. So when he came
• 12:08
  Speaker 9: to me and asked me to be part of this committee,
• 12:10
  Speaker 9: it was very important. And I said, absolutely. What can
• 12:14
  Speaker 9: I do to help? That was the first thing. So
• 12:17
  Speaker 9: when he talked to me about it, it was about,
• 12:19
  Speaker 9: I don't want anybody to feel.
• 12:21
  Speaker 1: The way I felt.
• 12:22
  Speaker 9: He was ashamed.
• 12:23
  Speaker 1: He was embarrassed. He's a 19-year-old kid that's wearing an Oscar.
• 12:26
  Speaker 1: How do you handle that?
• 12:28
  Speaker 9: And I want to help him spread that awareness so
• 12:32
  Speaker 9: no one else feels like this, so it's a normal conversation.
• 12:34
  Speaker 9: So when someone, and there will be plenty at 19
• 12:37
  Speaker 9: years old, and maybe with the advancements of medicine, maybe
• 12:40
  Speaker 9: that doesn't happen as much. but he wants to make
• 12:44
  Speaker 9: sure people don't feel the way he does. Awareness, building
• 12:48
  Speaker 9: awareness is one of the things that I wanted to
• 12:51
  Speaker 9: help him do, and I knew I needed to build
• 12:53
  Speaker 9: my awareness. Because when Anthony asked me to be on
• 12:56
  Speaker 9: this committee, I went home and told my wife, and
• 13:00
  Speaker 9: she goes, oh, what.
• 13:00
  Speaker 7: Was it all about?
• 13:01
  Speaker 1: Would you talk to Anthony about it? He goes, oh,
• 13:02
  Speaker 1: he wants me to be on this committee with him.
• 13:05
  Speaker 1: And she goes, oh, what committee is it?
• 13:07
  Speaker 9: And I'm like, I'm trying to remember, I'm like, And
• 13:15
  Speaker 9: as soon as she looked at me and her head turned,
• 13:19
  Speaker 9: I knew I was wrong on something. So I said,
• 13:25
  Speaker 9: you know what? Awareness is definitely what I need to
• 13:28
  Speaker 9: help build here. And it's going to start with me.
• 13:31
  Speaker 9: And then the third thing, maybe insignificant, but if you
• 13:37
  Speaker 9: take out your phones right now and go to text somebody,
• 13:39
  Speaker 9: and type in the word ostomy, your phone doesn't even
• 13:42
  Speaker 9: recognize it.
• 13:44
  Speaker 1: It comes up as misspelled.
• 13:46
  Speaker 2: Now that's something Apple's got to change. But I love
• 13:49
  Speaker 2: that John Nowak painted this picture of why awareness is
• 13:52
  Speaker 2: so important. And for Anthony Giordano, I had been talking
• 13:57
  Speaker 2: with him prior to the event. We have connections with
• 14:00
  Speaker 2: the Viscardi Center. But I did not know he had
• 14:03
  Speaker 2: an ostomy. And interestingly enough, He didn't know I had
• 14:06
  Speaker 2: an ostomy. So we kind of formed a friendship through
• 14:10
  Speaker 2: that and a kinship through that. And I look forward
• 14:13
  Speaker 2: to having him on the podcast to talk more about this.
• 14:16
  Speaker 2: But when Anthony took the podium, his message resonated loud
• 14:21
  Speaker 2: and clear with why the UOAA exists today.
• 14:26
  Speaker 7: I have three of my kids who are here today.
• 14:34
  Speaker 7: Two of them are still here.
• 14:36
  Speaker 10: And they would not be here today if my life
• 14:39
  Speaker 10: hadn't been saved. James McBrien, the back, Larry Fuchs. Where
• 14:51
  Speaker 10: are you, Larry? They knew I was sick. They visited
• 14:57
  Speaker 10: me in the hospital. It meant the world to me.
• 15:01
  Speaker 10: It means so much to me that all of you
• 15:03
  Speaker 10: are here. People I don't know. People I do know,
• 15:09
  Speaker 10: when I had my surgery, my parents were paying out
• 15:13
  Speaker 10: of pocket.
• 15:15
  Speaker 1: For my supplies. We didn't have insurance coverage.
• 15:22
  Speaker 10: Nowadays, my supplies would cost me about $ 600 a month.
• 15:29
  Speaker 1: The United Ostomy Association, through their advocacy, got insurance coverage.
• 15:36
  Speaker 10: So that people who have this disability don't have to
• 15:40
  Speaker 10: pay out of pocket. It's life-changing. So, from the bottom
• 15:49
  Speaker 10: of my heart, I want to say thank you to
• 15:51
  Speaker 10: everyone here. Thank you for attending. Thank you to our sponsors.
• 15:55
  Speaker 10: Thank you so much, John and James, for going on
• 15:57
  Speaker 10: this ride. You guys did a wide share of the work,
• 16:02
  Speaker 10: and I really appreciate it.
• 16:05
  Speaker 4: And that is why I went to D.C.
• 16:07
  Speaker 2: In March on behalf of the UOAA to make sure
• 16:11
  Speaker 2: people with these ostomy supplies can continue to get it
• 16:16
  Speaker 2: covered by insurance. And I felt Anthony hit the nail
• 16:20
  Speaker 2: on the head. Now, I'm 33, and I've had this
• 16:24
  Speaker 2: since I was from birth. It saved my life.
• 16:28
  Speaker 7: So seeing him and.
• 16:29
  Speaker 4: Also George Salome, who also has had an ostomy.
• 16:33
  Speaker 2: For about 50 years, It inspired me because, and you're
• 16:37
  Speaker 2: going to hear from George in a second, but sometimes
• 16:41
  Speaker 2: I worry that last year the gallstone, what's next?
• 16:45
  Speaker 7: Will the body break down even more?
• 16:47
  Speaker 2: Yet here are two men, you know, somewhat older, I
• 16:51
  Speaker 2: got to say this, living with this, you know, ostomy, thriving, I.
• 16:58
  Speaker 4: Feel like, I can keep going.
• 17:01
  Speaker 2: And being at this event, and thank you for having me, UOA,
• 17:04
  Speaker 2: being at this event has personally inspired me to keep
• 17:07
  Speaker 2: going and to have trust in the body that we
• 17:11
  Speaker 2: too can make it 50 plus years on this earth
• 17:14
  Speaker 2: with an ostomy. Now, Anthony and George Salome have had
• 17:20
  Speaker 2: this later in life. So they've had it for about,
• 17:25
  Speaker 2: since they were in their 20s. But clearly they did
• 17:28
  Speaker 2: not let their lives be affected entirely.
• 17:32
  Speaker 7: They keep going.
• 17:34
  Speaker 2: And I know I feel like being born with it,
• 17:38
  Speaker 2: not having to adapt to it entirely, just being used
• 17:41
  Speaker 2: to it, will help me.
• 17:45
  Speaker 4: And feel, how do I say, it's a different experience,
• 17:49
  Speaker 4: I guess.
• 17:50
  Speaker 2: But it helps me realize that I too can make
• 17:54
  Speaker 2: it into my, 50th anniversary, 60th anniversary, 70th anniversary of
• 17:59
  Speaker 2: having a stoma.
• 18:01
  Speaker 4: So those are some goals I've learned to strive for
• 18:06
  Speaker 4: thanks to this event.
• 18:07
  Speaker 2: But anyway, here's George Salome, who was really honored the
• 18:10
  Speaker 2: other night at the North Shore Country Club in Nassau County.
• 18:17
  Speaker 1: There's a family member that's wearing an ostomy pouch.
• 18:21
  Speaker 11: If not, there's somebody in this room that has someone
• 18:24
  Speaker 11: in their family that's suffering with ulcerative colitis or Crohn's disease,
• 18:29
  Speaker 11: which is the disease that actually allows us to get
• 18:33
  Speaker 11: this procedure and save our lives. So I think the
• 18:36
  Speaker 11: whole purpose of today was the awareness piece. If we
• 18:38
  Speaker 11: can educate 100 people in this room today, I think
• 18:42
  Speaker 11: we've been successful. We'll even take a donation to the
• 18:46
  Speaker 11: United Ostomy Association of America. Tell your friends, tell your relatives,
• 18:51
  Speaker 11: this association, we have 300 support groups around the country.
• 18:55
  Speaker 11: There's a million of us today walking around in North
• 18:57
  Speaker 11: America that Anthony and I have today. Now, if you
• 19:01
  Speaker 11: look at us and bring two other people up to
• 19:03
  Speaker 11: this podium, you wouldn't know who has the Austin Power Shop.
• 19:07
  Speaker 11: That's what this organization has done for both of us.
• 19:10
  Speaker 11: So with that, I'll just say thank you again. Thank you, John,
• 19:13
  Speaker 11: for all the work you did, and James, and you,
• 19:15
  Speaker 11: and Edna.
• 19:16
  Speaker 7: Thank you again.
• 19:25
  Speaker 1: So now it's Christine's turn.
• 19:26
  Speaker 10: Christine Ryan is the Executive Director of United Ostomy Association
• 19:30
  Speaker 10: of America.
• 19:32
  Speaker 7: Hello, everybody.
• 19:33
  Speaker 5: Hello, everyone.
• 19:35
  Speaker 12: I think I've tried to meet everyone on the course today.
• 19:38
  Speaker 12: Some of you are here for the dinner this evening.
• 19:40
  Speaker 12: Thank you for joining us. So I just wanted to
• 19:45
  Speaker 12: say on behalf of all of the donors that have
• 19:48
  Speaker 12: given for the golf event today, all of our sponsors,
• 19:53
  Speaker 12: you can see all their signs all over, the tea sponsors,
• 19:56
  Speaker 12: the birdie sponsor, the hole-in-one sponsors, the technology sponsors, without
• 20:01
  Speaker 12: all of you doing what you do to support.
• 20:04
  Speaker 6: Us, We really would not be here today.
• 20:06
  Speaker 12: So by you supporting UOAA, we can support the ostomy community.
• 20:12
  Speaker 6: And, you know, we have an information line.
• 20:15
  Speaker 12: We provide free educational resources for ostomates and for their
• 20:20
  Speaker 12: nurses that are taking care of them. We have, like
• 20:23
  Speaker 12: George said, support groups all over the country. We offer
• 20:25
  Speaker 12: a biannual conference.
• 20:27
  Speaker 6: But the most.
• 20:28
  Speaker 12: Important thing that we do is we connect individuals with
• 20:31
  Speaker 12: other ostomates We give them the knowledge they need through
• 20:34
  Speaker 12: the educational materials to determine what kind of ostomy they have.
• 20:40
  Speaker 12: How do you care for it? How do you eat
• 20:42
  Speaker 12: with an ostomy? How do you have an intimate relationship
• 20:45
  Speaker 12: with other individuals? So it's very important that people understand
• 20:49
  Speaker 12: that we are here for them. And I can tell
• 20:51
  Speaker 12: you firsthand from the phone calls that I have answered
• 20:54
  Speaker 12: that people walk out of a hospital, they have no
• 20:58
  Speaker 12: idea how to order their supplies. They don't know that
• 21:01
  Speaker 12: another ostomate is out there that is going through what
• 21:03
  Speaker 12: they've gone through.
• 21:04
  Speaker 6: They don't know that there's nurses that will take care
• 21:06
  Speaker 6: of them.
• 21:07
  Speaker 12: And so it's important for us to be able to
• 21:09
  Speaker 12: share that information with all of those individuals.
• 21:12
  Speaker 6: And it does improve the quality of their life. And
• 21:14
  Speaker 6: we hear that over and over again.
• 21:17
  Speaker 12: So on behalf of all of the support that you're
• 21:21
  Speaker 12: providing us today, we are truly making a difference in
• 21:25
  Speaker 12: so many individuals' lives and their caregivers' lives. and their
• 21:30
  Speaker 12: families and their friends that can say we are so
• 21:32
  Speaker 12: happy that they are with us still. So I just
• 21:35
  Speaker 12: wanted to thank you all for that. We also wanted
• 21:40
  Speaker 12: to recognize an individual.
• 21:42
  Speaker 6: In the room, and I'm going to read this from
• 21:46
  Speaker 6: a paper, and I'm not going to cry, I hope.
• 21:50
  Speaker 12: It is my great privilege to stand before you today
• 21:53
  Speaker 12: and celebrate a truly remarkable individual, George Salomey. For many years,
• 22:03
  Speaker 12: George has been an integral part of UOAA, embodying the
• 22:07
  Speaker 12: very spirit of dedication, generosity, and service that makes this
• 22:12
  Speaker 12: organization thrive. George's commitment to our mission of having nothing
• 22:16
  Speaker 12: short of extraordinary, it's just beyond. His tireless efforts have
• 22:21
  Speaker 12: paved the way for greater advocacy, education, and support for
• 22:25
  Speaker 12: the ostomy community across the nation. Through his leadership, wisdom,
• 22:30
  Speaker 12: and unwavering determination, he has strengthened the foundation upon which
• 22:34
  Speaker 12: we stand today. Beyond his invaluable service, George's generosity has
• 22:39
  Speaker 12: left an enduring impact. His financial support has ensured that
• 22:43
  Speaker 12: our programs continue to reach those who need them the most,
• 22:47
  Speaker 12: providing resources, hope, and empowerment to countless individuals navigating life
• 22:53
  Speaker 12: with an ostomy. But George's contributions extend far beyond financial generosity.
• 22:58
  Speaker 12: He has given his time, his heart, and his steadfast
• 23:02
  Speaker 12: belief that every person deserves dignity, understanding, and a strong
• 23:07
  Speaker 12: community to lean on. George, your legacy is one of kindness, dedication,
• 23:13
  Speaker 12: and meaningful change. Your hard work has shaped this organization.
• 23:17
  Speaker 12: Your service has touched the lives of so many. We
• 23:21
  Speaker 12: are forever grateful for your passion, your leadership, and your
• 23:24
  Speaker 12: unwavering belief in the cause.
• 23:27
  Speaker 6: Tonight, we celebrate you.
• 23:29
  Speaker 12: We thank you, and we honor the profound impact that
• 23:31
  Speaker 12: you've had on United Ostomy Associations of America and every
• 23:35
  Speaker 12: single person who has been fortunate enough to know you.
• 23:38
  Speaker 6: Please join me in giving a round of applause to
• 23:40
  Speaker 6: a true champion, Joyce.
• 23:54
  Speaker 10: George didn't know this was going to happen.
• 24:00
  Speaker 1: Yeah, I'll take the mic. You've only got about 45 minutes.
• 24:05
  Speaker 1: I have a few things to say. That was a surprise.
• 24:09
  Speaker 7: Thank you.
• 24:09
  Speaker 1: All right, I'll just give you some anecdotes.
• 24:13
  Speaker 11: 1976, newly married, new job, one child on the way,
• 24:16
  Speaker 11: got sick as hell with ulcerative colitis.
• 24:19
  Speaker 1: For those of you that Do or don't know about
• 24:22
  Speaker 1: ulcerative colitis.
• 24:23
  Speaker 11: It's a crappy, not a pun on words, a crappy
• 24:26
  Speaker 11: disease where you have no control of your bowels, whatever.
• 24:29
  Speaker 1: And in those days, there were really no biologics available
• 24:32
  Speaker 1: to us.
• 24:33
  Speaker 11: Anthony and I can tell you the only two drugs
• 24:35
  Speaker 11: they were given to us back in the 70s and
• 24:37
  Speaker 11: 80s was prednisone, which is the magic drug, and sulfur.
• 24:41
  Speaker 1: And of course, if it didn't work, you ended up
• 24:43
  Speaker 1: in surgery.
• 24:44
  Speaker 11: So I just decided at that time, when I was
• 24:47
  Speaker 11: newly married at the time, it wasn't going to look
• 24:49
  Speaker 11: like that. So I didn't care what it looked like.
• 24:51
  Speaker 11: Felt like, smelled like I was going to do it.
• 24:53
  Speaker 11: And I had great docs in the city, in Manhattan.
• 24:56
  Speaker 11: Second opinion up in Boston. Came back and said, let's
• 24:59
  Speaker 11: do it. So it was very elective for me, which
• 25:01
  Speaker 11: is good. I mean, I had my head together. Unfortunately, unfortunately,
• 25:06
  Speaker 11: there are a lot of people that are going for
• 25:07
  Speaker 11: an emergency surgery for diverticulitis, end up with an ostomy.
• 25:11
  Speaker 11: And they wake up really kind of, you know, messed up.
• 25:15
  Speaker 11: And it's up to us to actually educate them as
• 25:17
  Speaker 11: to how to live with this thing. So the key
• 25:19
  Speaker 11: thing is that.
• 25:22
  Speaker 11: There's 100,000 surgeries done a year, 50,000 permanents. There's a
• 25:26
  Speaker 11: million of us walking around with pouches on in North
• 25:28
  Speaker 11: America today. And unfortunately, even today, and I fault myself,
• 25:31
  Speaker 11: ourselves on this, half the people in this.
• 25:34
  Speaker 1: Room, they don't call it colostrum, but they call it something.
• 25:39
  Speaker 1: And by the way, John, where is John?
• 25:41
  Speaker 11: If you go on Google, between what you said and now,
• 25:45
  Speaker 11: Apple is belly-ostomy the right way. But so in reality,
• 25:50
  Speaker 11: it's really important to know. And listen, I've done bike
• 25:54
  Speaker 11: rides for this thing, and I've done.
• 25:55
  Speaker 1: A lot of things.
• 25:57
  Speaker 11: And people think that what we have is like this
• 26:01
  Speaker 11: crazy thing wearing on your body, and it's never going
• 26:05
  Speaker 11: to be good. But we're living proof, living proof that
• 26:09
  Speaker 11: this is itself. We implore you to go back, talk
• 26:11
  Speaker 11: to your friends, talk to your relatives. You'll be in
• 26:14
  Speaker 11: a cocktail party. It's, oh, gee, my bowels are blah, blah, blah.
• 26:18
  Speaker 1: And I don't want to have that.
• 26:19
  Speaker 11: And I know people that let ulcerative colitis go for
• 26:24
  Speaker 11: 10 years and beyond and never made it because it
• 26:27
  Speaker 11: got worse than that. And you know what that means,
• 26:29
  Speaker 11: the CA word. So this is the thing. We save
• 26:33
  Speaker 11: lives by doing what we're doing today.
• 26:35
  Speaker 1: Thank you very much.
• 26:43
  Speaker 2: And before I get to my closing thought, I just
• 26:45
  Speaker 2: want to say thank you to PSE & G as
• 26:48
  Speaker 2: well as Hollister for supporting the UOAA. How cool is that?
• 26:54
  Speaker 2: Got to see my friend Amy DeLeo and her team
• 26:57
  Speaker 2: at PSE & G who thankfully donated, I believe, $ 500.
• 27:05
  Speaker 3: To the UOAA. So thank you to PSE & G.
• 27:09
  Speaker 2: And my final thought today is about leaning into the
• 27:15
  Speaker 2: UOAA is this. I love what George Salome said there,
• 27:20
  Speaker 2: living proof, living proof. And I guess in some way
• 27:25
  Speaker 2: I've been, and this is not always easy to talk
• 27:29
  Speaker 2: about because it is a very personal issue.
• 27:31
  Speaker 4: However, however, these two.
• 27:34
  Speaker 2: Gentlemen have inspired me to believe that this body can
• 27:38
  Speaker 2: adapt no matter what age you get the ostomy, whether
• 27:41
  Speaker 2: at birth, whether at 20, whether at 30, it can
• 27:44
  Speaker 2: adapt for you, and with you, and you just got
• 27:47
  Speaker 2: to take care of it, and that's the beauty of
• 27:49
  Speaker 2: the body, so I was moved this past Monday night,
• 27:56
  Speaker 2: and again, thank you, Christine, thank you, Anthony, thank you, Mr. Salome,
• 28:01
  Speaker 2: and I look forward to being more involved, leaning into
• 28:03
  Speaker 2: this more, because, let's face it, I've had My struggles
• 28:10
  Speaker 2: and my emotional struggles with having.
• 28:12
  Speaker 3: A colostomy my whole life through school.
• 28:15
  Speaker 2: And here we are today pushing through it and now
• 28:19
  Speaker 2: finding a community who all have one leg up with
• 28:24
  Speaker 2: the United Ostomy Association.